Diabetes Advocacy Orgs: 2011 Milestones and What to Expect in 2012

We wrapped up the year here at DiabetesMine with our traditional year in review post — outlining everything we thought was BIG for our year in diabetes. That got us thinking:

What did the major diabetes advocacy organizations and patient communities in this country believe were their biggest accomplishments in 2011? How would they describe the year? And what are their flagship plans / goals / strategies for continuing to help the diabetes community in 2012?

We decided to query 11 of these organizations, point blank. Below are the answers we received from their various leaders and spokespeople (presented in alphabetical order).

One great year down, and headed exciting places for the next? You be the judge...

American Association of Diabetes Educators (AADE)

2011: We are very proud of the progress AADE made in 2011, especially as it relates to increasing access to, and enhancing the quality of, diabetes self-management training (DSMT). We launched demonstration projects that are looking at ways DSMT fits within the new healthcare models they are talking about in Washington, like the Patient-Centered Medical Home, and investigating the use and effectiveness of DSMT delivered via mobile health. (Study results to come later in 2012.) We also started a multi-year effort to require licensure of diabetes educators at the state level, which will ensure that all healthcare providers who deliver DSMT will have sufficient knowledge to provide quality care to patients. This will also provide a clearer entry point for those wishing to enter the field. We are also very excited about the studies we completed that both further bolster the body of knowledge on the clinical and cost effectiveness of DSMT, and allow us to look at future workforce needs.

2012: will be a year of building upon the knowledge we gained from the workforce study by building a more defined career path for those individuals who want to be a member of the diabetes care team, including peer counselors, and by increasing our product offerings to support that career path. We will also explore launching a multi-faceted awareness campaign to raise the profile of diabetes educators and the importance of diabetes self-management education and training. Our advocacy efforts will center on the state licensure initiative (expanding beyond Kentucky, our first state to enact it), continuing to seek support for the Diabetes Self-Management Training Act and expanding our efforts to educate the diabetes community on advocacy issues at the federal and state levels. In 2011, we reached out to the Diabetes Online Community in an effort to seek common ground on issues and support one another where there is overlap. We look forward to continuing that in 2012.

American Diabetes Association (ADA)

2011: One highlight of the year is always American Diabetes Month, and November 2011 was one of our most successful yet. We are grateful to the many partners, sponsors, famous faces and individual supporters who raised their hands to pledge to Stop Diabetes®. With their help, this social media-driven campaign spread our Stop Diabetes® message to millions of people nationwide.

2012: The Association will embark on a new four-year Strategic Plan that focuses on improving outcomes for people with diabetes and pre-diabetes, expanding the field of diabetes research, fighting discrimination, heightening the nation's sense of urgency for the diabetes epidemic and building our organization's capacity for success.

In the realm of social media, the American Diabetes Association wishes to be simply more. We want to listen more to the online community to get a sense of what they really care about, and then deliver on that content. We want to engage more, so that communication is truly two-way and customer-service oriented. And we want to share more of the great things the Association has to offer people with diabetes and their families, from research and lifestyle advice to inspirational stories and volunteer opportunities.

Diabetes Advocates

2011: The Diabetes Advocates program grew from 23 members (in 2010) to 64 members, and had a presence at Friends For Life, AADE, TCOYD and the World Diabetes Congress in Dubai, largely thanks to the sponsorship of Animas and OneTouch.

2012: We will build upon the success and growth of the program in 2011, to diversify the group even more, improve the platform through which members of the program communicate, continue developing/supporting more diabetes awareness initiatives and provide members of Diabetes Advocates with more tools to connect and learn more from each other to ultimately benefit more people touched by diabetes.

Diabetic Connect

2011: Diabetic Connect started the year with a huge announcement: DiabetesMine became part of the Alliance Health Networks family, and Amy and Allison joined us in new roles, bringing our members even more diabetes news and views. Other highlights included the addition of nutritionist-approved recipes to the site and the launch of the Diabetic Connect mobile app, allowing members to stay connected anytime, anywhere. In November, we launched a Blue Circle campaign in honor of Diabetes Awareness Month, getting thousands of signatures on our online petition. Then, we capped off the year with another big announcement: a partnership with the renowned Joslin Diabetes Center. Three of the center's clinicians joined Diabetic Connect as expert members and are now available to answer the community's diabetes questions.

2012: We'll build on this year's work by continuing to grow our community of experts and advocates as valuable resources for our members. We plan to increase the personal relevance of the site, focusing on members' abilities to find the content and people that will help them most. With even more exciting ideas in mind, we hope to make this Diabetic Connect's best year yet!

Diabetes Daily

2011: Diabetes Daily continued to follow its mission of helping everyone with diabetes live a better life. We reached over 1.5 million people, more than doubled our membership to 70,000, and opened a Diabetes Daily University used by students in over 20 countries. In a preview of what's to come, we engaged global thought leaders to discuss ways we can work together to leverage our growing network of passionate patient advocates.

2012: We are focused on the pillars of helping people with diabetes: education, community, and advocacy. We are dramatically expanding our online course and live event offerings and empowering community members to better help their peers. In a dramatic expansion of our advocacy efforts, we will be taking advantage of the large size of our network to support the most promising efforts to expand access to health care, unite people with diabetes, and raise awareness about the needs of our communities. As Jean-Claude Mbanya, President of the International Diabetes Federation, says, "We must use people power!" For all of the diabetes online community, 2012 promises to be a year of serious people power! If you'd like to help direct our advocacy efforts, sign up for the Diabetes Daily Champions program.

Diabetes Hands Foundation (DHF)2011: This was an extraordinary year during which we have been heavily focused on building a more solid foundation to continue to grow in a healthy and sustainable way in the coming years. We received a very generous capacity building grant in the amount of $150,000 from the Helmsley Charitable Trust. This grant is enabling us to create a more solid foundation for a sustainable future, through board development and governance, improved fundraising and communications strategies and expansion of our documentation and training systems.The Big Blue Test was a success for the third year in a row. More than 8,000 people participated (vs. 2,000 the previous two years) and more than 8,000 people with diabetes in need will benefit from the Big Blue Test grants issued (thanks to the support of Roche, the program sponsor) to six humanitarian groups: Life For a Child run by the International Diabetes Federation (receiving US $25,000); along with Moundville Medical Clinic, in Tuscaloosa, AL; LIFT For Teens/Walk and Play For Wellness in San Rafael, CA; University of Colorado, Denver; St. Anthony Medical Clinic, in San Francisco, CA; and Pecos Valley Medical Center, in Pecos, NM — each of whom received $10,000.2012: We will continue developing our social networks (TuDiabetes.org in English and EsTuDiabetes.org in Spanish), partnering with groups and individuals globally to continue to offer people touched by diabetes with access to life-saving support and empowering information that they can bring into the conversation with the doctors and medical professionals they see in their lives. We will grow the Big Blue Test to make even more people aware of the benefits of exercise in connection with improvements in blood sugar levels.Diabetes Research Institute (DRI)2011: Among our notable accomplishments is the work underway to induce islet regeneration by building upon the groundbreaking discovery of "super islets" by our collaborators in MÃ¡laga, Spain. Certain mutations in a critical enzyme for glucose sensing, called Glucokinase (GK), have also been shown to vastly increase beta cell mass and insulin production. They also replicate safely and at a faster rate. DRI researchers are now using the data gleaned from these GK studies to develop strategies to generate more and better islets.Additionally, DRI researchers and collaborators from the Karolinska Institute in Sweden have built upon research with the "Living Window" (the anterior chamber of the eye). In the latest study, our researchers, for the first time, were able to observe — in real time — the immune responses against transplanted islets, showing how immune cells attack, infiltrate, and reject the transplanted insulin-producing cells. The Living Window work was featured in three of the most prestigious scientific journals, on the covers of both Nature Medicine and Cell Metabolism and published in Proceedings of the National Academy of Sciences (PNAS).2012: Global collaboration will continue to play a significant role in accelerating research toward a cure. We will continue to work with and expand the Diabetes Research Institute Federation, which currently has almost two dozen members, and the Cure Focus Research Alliance, which extends expertise beyond diabetes to other autoimmune diseases in order to:

1) conduct clinical trials more efficiently and cost effectively, and

2) develop new approaches to overcome the remaining immune and supply challenges.

DSMA (Diabetes Social Media Advocacy)2011: One of DSMA's biggest accomplishments is the Blue Fridays initiative. We were able to raise awareness for World Diabetes Day and Diabetes Awareness Month by asking the global diabetes community to unite and stand behind the global symbol for diabetes. The diabetes community joined together to create the "Wear Blue" video, that went viral in October 2011. Blue Fridays was celebrated in six countries. 2011 was a great year of connecting the diabetes community, as DSMA has reached a huge number of people in the diabetes community through various social media outlets and word of mouth.2012: DSMA will provide educational webinars for the diabetes community to help bridge the gap with patients and health care providers. In late 2012, we will develop outreach programs for support, education and communication to reach those who do not yet participate in social media. We will continue to provide great topics for DSMA's twitter chat and have exciting and interesting guests on DSMA Live.International Diabetes Federation (IDF)2011: In addition to the UN High-Level Summit on Non-communicable Diseases and the World Diabetes Congress, the IDF has also worked on the following projects:

2) To support the translation of political commitments into action for the millions of people with diabetes, IDF has produced the first Global Diabetes Plan 2011-2021. This document is the result of months of consultation and debate, and is the first 10-year action plan for the global diabetes community.

3) Over the last year we have built a wealth of best practices, including new clinical guidelines, a guide to national diabetes programs, translational research through our BRIDGES program, and our diabetes education initiatives that aim to develop a high-quality global workforce for diabetes education and provide new tools including Diabetes Conversations, a "train the trainer" program for CDEs.

2012: Our World Diabetes Campaign will be broader and bolder than ever before. It will start earlier in the year to create a bigger Nov. 14 global celebration, involving IDF stakeholders, from Member Associations and the DOC to IDF's Young Leaders in Diabetes Program. The key to our success remains our unity and global solidarity across geography, race, gender, religion and any other barrier the world might try to put in our way. We have a clear roadmap of action to keep diabetes on the global agenda and translate commitments into action on the ground. We will continue to be the world's conscience on diabetes — one community, one mission and one voice.JDRF2011: Our research efforts continue to produce significant advances in our three focus areas. This includes innovative ways to find solutions, as evidenced by the Glucose-Responsive Insulin Challenge we launched in 2011. Our goal in opening up the question to the public is to leverage the knowledge and skills of a fresh, new pool of talent, and obtain different perspectives on how a glucose-responsive insulin (GRI) treatment could be designed. In 2012, we will continue to pursue new ways to incentivize researchers to focus on type 1 diabetes.If there was a theme to 2011, it was the beginning of the transformation of JDRF to a more inclusive, more relevant, more efficient and more effective organization. Not the least of these was the launch in November of a new brand identity that better reflects what we do and who we serve today. We are now using only the acronym JDRF, dropping Juvenile Diabetes Research Foundation, due to the outdated implication that T1D affects only children. JDRF is committed to ALL people with this disease, at every age, and at every stage, and to help us put an end to T1D we must help clarify understanding of the disease for others.And the combined efforts of JDRF, the T1D community and families, top researchers and clinicians, and government officials, helped convince the FDA of the need for cooperation to move artificial pancreas research forward. This push for clear and reasonable artificial pancreas guidance was critical, so that studies can move forward and we can bring this technology to people with T1D as soon as possible.2012: You will see JDRF continue to expand its efforts to make sure that the solutions we are all working so hard to bring to market do not face unreasonable regulatory hurdles. But we didn't just look at how we work with those outside JDRF; we also examined closely how we work with each other to best serve the T1D community. The result was the beginning of a major organizational initiative to better align JDRF with our community's needs and increase our capacity to serve those needs. This effort to bring more efficiency, focus and collaboration will continue into 2012 and beyond. None of JDRF's accomplishments could have happened without our dedicated volunteers and staff, and the T1D community.Taking Control of Your Diabetes (TCOYD)

2011: TCOYD completed an incredible series of national Taking Control of Your Diabetes Conferences and Health Fairs. TCOYD inspired and motivated thousands of individuals with diabetes from across the nation and had an unprecedented number of renowned faculty guest speakers and special guests involved, from Natalie Strand, to Ben Vereen and Nicole Johnson. In the summer of 2011, TCOYD-TV's season four episode "Weight Management" was honored with the 2010 Aurora Gold Award and our award-winning newsletter was made available online to 60,000 TCOYD members.

2012: TCOYD is working towards expanding our online presence in addition to launching our re-designed website. Additionally, we are aiming to create stronger partnerships with other local and national diabetes organizations including Insulindependence, The Behavioral Diabetes Institute and online diabetes communities such as dLife, Tu Diabetes, DiabetesMine and Diabetes Daily. Our goal in collaborating with fellow diabetes organizations is to cross promote all of the amazing programs that these organizations have to offer. TCOYD also continues to focus our efforts on raising money and planning for Extreme Diabetes Makeover Season Two.

We love the recurring themes of cooperation and doing more with social media! Thanks to each of these orgs for the work they do, and for communicating their milestones and goals with us here. Here's to a productive and collaborative new year!

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community.
The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines.
For more information about Healthline's partnership with Diabetes Mine, please click here.

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Archived Comments

kathy|2011-12-30

I always enjoy those "end of the year summaries and stats"on most topics, but this one was both interesting and compelling to read. Its reassuring to see that all of these individual organizations are all reaching for the same goal.

Daniel|2012-01-09

This is an excellent review of diabetes advocacy in 2011 in a format appealing to the public. I am looking forward to what we can accomplish together with our new focus on mobile health models!

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